Healthcare!

I am in somewhat of a unique situation to talk about healthcare here. I have navigated Hans through more than 1000 medical encounters. I have seen more than one thousand medical claims processed in excess of two million dollars. Without healthcare, Hans wouldn't have made it to see his fourth Christmas. Without health insurance, our family would have been bankrupt within a matter of months of his diagnosis, if we'd have been treated at all. Hans has always had the good fortune of "excellent" health insurance, but in my heart, I know that he has no more inherent right to any medical services than any other child who should need them.

 I'm pleased with today's Supreme Court ruling on the Affordable Care Act. I believe that access to quality, affordable healthcare is a basic human right, on par with, but even more basic and elmental than free and appropriate public education. I am glad to see the day has come that we finally recognize that as a country. I am experiencing a sense of pride and justice today even as I walk through the children's hospital. Finally, each child I pass has the same right and access to healthcare as my own son. I am proud that today we recognize that healthcare is not just for the most fortunate or the most impoverished, but for all.

I know that the 'Mandate' portion of this bill is controversial, but I fear it has been overly politicized. At the heart of the matter: all Americans need access to healthcare. On an individual level, the responsible thing to do is to get it. No one individual should ever presume to bank on the ongoing good health and absolute well- being of their entire family. Despite our best efforts to eat well, exercise and practice all reasonable health and safety recommendations, it is clearly and certainly within the realm of possibilities that on any given day, any one of us could experience a series of events that lands us in an ER resulting in utterly devastating and life-changing health news.

 I hope we can come together as a country and embrace this as the new law of the land. I hope that we can celebrate the greatness of this Act for what it does for basic human rights. I know that one day we will see this decision as one of the most important of this century. Once we figure it out and iron out the kinks, this ACA Act will be a cornerstone in making our families and our country stronger and healthier.

 In Hans news: we are fine. We are actually all done with XRT tomorrow! I had counted the days wrong! We saw Dr. Araz yesterday, and we decided that we will get stem cells on Monday July 2nd. She is already thinking ahead about the next steps. Nothing is settled, but we are kicking around our ideas. We do know that Hans will need a few weeks off to recover from this month of chemo and xrt and to let the stem cells do their thing. We will scan July 17th/18th and then we hope to start another treatment the following week. My mom got in yesterday and we plan to celebrate the end of XRT tomorrow night!

General Sherman

Our little Weberling family went in two different directions this weekend.
Hans and I are on operation recuperation.  We've logged a good 2000 miles to and from LA in the past two weeks alone.  Hans is doing well, but a little bit wiped out now after 15 days of this chemo/radiation combo.  I can just see it in his eyes - he needs some down time to absolutely chill out!  I am right there with him.  He is weaning off of one oral pain med, slowly, with high hopes for no pain after a complete wean.  We are also adding in an appetite stimulant.  He is soaking up home time like a sponge this weekend.  I have piles of projects everywhere, so I am happy to get to some of those things.

Kevin and Elle hit the Road to camp in Kings Canyon National Park/Sequoia National Park for some outdoor adventure.  Pretty cool to live so close by: these parks are 100 miles from home...

Here's a picture, just for my dad, he's a real tree man!  This is General Sherman - the largest living organism on the planet.  52,000 cubic feet - it's not the tallest tree in the world, but the largest.  Its biggest branch is seven feet in diameter.  Elle said people were flocking to it...visitors coming from all over the world to check it out.  Just a little Central Cali FYI...

Hans and I did have one little adventure today - we took advantage of Godmother Roxie being just up the road for a conference...we went out and met her and her mom for chips n salsa.

Good News

Hans got a follow up CT of the spine on Monday.  We got a quick good news report.  The lesion wrapping around the spine is nearly completely resolved!!!  Dr. Wong did have to qualify it by saying that an MRI would give us a better picture!  I need to clarify about the gumball-sized lesion as well.  I will see Dr. Wong tomorrow.
For now we will continue with the radiation to the skull and the Carboplatin/Etoposide.  Hans is tolerating it all pretty well!  Better than I am, I think;)  He still has zero pain!  He is trying to eat, but his appetite is a little messed up I think with the treatments.  He hasn't put much weight back on from his low point the end of last month, but he has gained back one pound of the seven he lost in his pain last month.  Thanks to Michelle, Carmen, Tracy, Ginger, Blair and Kim, and all the girls back in TX who are doing an HEB Chicken Noodle Soup Drive for Hans.  Since we moved away from Texas and the local Texas HEB grocery store, no other brand of soup will do.  We have to have it shipped!  I have put in a formal donation request with HEB, but the girls are coming through for us until they make a decision!   Thanks for taking care of him, ladies!!!

We got a break from our drive last night.  Kev had to be in the LA area for work.  We just drove and joined him in his hotel!  It was a little bit of a luxury for me to be relieved of the long drive and the chores of home.  We even went out and just had a little bit of fun, too.  Elle stayed with Claire and got rides to/from soccer camp from Eszter!  Thanks everyone.

We are happy to share a little good news.  It appears as if, once again, the Radiation Oncology Team helped pull Hans out of a scary nosedive.  Of course, we don't know what else is going on with the other spots, but we are grateful for this news!  The spinal lesion was causing Hans the most problems.  We are glad that it is gone or almost gone.  Just to fill you in, the lymph node on the right neck is perhaps somewhat smaller, but it is not yet fully resolved.

Thanks for check up on us.

Happy Father's Day

Elle and Hans spraying each other on the bumper boats.  Hans finished the DeathStar in the last week or so!  Thanks, mom, for going in on the early b'day gift for him!

Kev and Elle tonight at dinner (Hans dodged the camera, but he was right there with us...)

Here's to hoping everyone had a nice, fun Father's day just like we did.  Happy Father's Day to our dads, Grandpa Oscar, Grandpa Dean and Grandpa Dale.  We love you guys!  Kevin - you've done a heck of a job for our little dude these past almost 6 yrs of our pedi cancer rollercoaster.  Keep up the good work:)

Hans continues to do well and is getting back into some of his old activities.  We've had a couple nice family swims this week, for sure.  We had a mellow weekend at home, thank goodness.  Just what we needed.  We had the surprise trip to the hospital for 14 days, and then started the commuting for xrt, so I feel like I just started to catch my breath this weekend.  Kevin took Hans into LA on Friday and I got rolling on the paperwork, cleaning and my decorating 'homework' I had left over from Aunt Debbie's visit.  It's not done, but it all feels better. 

We seem to have a new tradition around here - today we celebrated Father's Day with dinner and GoKart Ride.  It was HOT here (108)!  But there was no line at our little amusement center:)  And when you are racing around a Go Kart track you get a breeze anyway, right?  We did the bumper boats today, too, and Hans got away with driving his own boat even though he's just half an inch shy on the height requirement.  Fun, fun, fun and we all got soaked.

We are gearing up for another week of Xrt, and Kev back to work and Elle off to a local full day soccer camp at CSUB.  Her Nationals team had to fold so she doesn't get to go to Tennessee next week:(  The team folded b/c too many of the girls were taking enrichment summer school courses.  It sort of worked out for us since I was going to take her, and we'll still be doing Xrt...  So, we are glad to put her in a local camp for one week, anyway.  It'll be HOT, but after our time in TX, we are sure she can stay hydrated and pace herself.  Thanks Toths for the rides and the technical assistance getting her into camp.  I've been so wrapped up in Xrt, the simplest things like filling out a camp form can slide right by.  What a blessing that Krisztina will print up the form, drive it over here, and stand here smiling while I fill it out.  She'll highlight what Elle needs to bring, and help with rides next week! I'm lucky that I have my pal Shelley to keep giving me the heads up on what I need to turn in for GS camp later this summer.  Thanks, Shelley:)  Krisztina told me "I just don't know how you do it."  Sometimes I just laugh and say, "Poorly!" But I get by with a little help from my friends...   

This blog is evolving into an ongoing thank you note!  Thanks to Pat K. and M. from Portland!  Ninjago and Bionicle arrived Thursday! WOW. Hans was thrilled!!!  Thanks also to the Tenneson's for the awesome LEGO robot!  WOW.  Thanks to Carmen and fam for the Bionicle!  And, finally, thank you LEGO GROUP for Captain America and a Bionicle.  WOW.

3 more weeks of Xrt

It has been a few days since I posted, and I didn't want you to worry. Hans is doing well on our Xrt schedule. We have LONG hours but Hans doesn't mind, so long as we can be HOME at the end of the day. This whole week, there have been a couple of things making each day longer than it might have been, but we are shooting for doing many of our days in a 9 - 5 routine.

 News: Hans' pain is still a ZERO! Hooray. We are beyond thrilled. We have Hans on just a third of the dose of his one pain med, and we will soon be discussing cutting back on his other oral pain med. This is fantastic news. Dr. Wong is going to do a quick CT of the spine next week so we can see where we are at. He said that we might have some wiggle room to increase the number of days if we need to.

 I must THANK Gramma Kathy and Aunt Debbie. They were here for the whirlwind of days! Debbie found Hans' dream of Skylanders characters! It was a shopping feat to find 5 of the 6 on his list that we've been shopping for since Christmas. Debbie also worked like the next Design Star and helped us decorate our mantle area. Decorating is an underdeveloped skill of mine, so I can use a little assistance. Our new place is bigger, and we've had a lot of projects, so I've been sort of stymied. It turned out sooo pretty! Kathy spoiled Elle with lots of shopping and some good QT with both of the kids.

 The Grammas can't get enough Hans/Elle time. My mom will be coming back in 2 weeks, and Gramma Kathy will be back down in a month.

Thanks for checking up on us and for helping us keep our eyes on the prize...the 18th miracle of Hans!

Welcome Home x 3

Adding pics and notes to my post last night. We came home to a fun sign, full meal, and a MAILBOX full from our lovely Lego Fairy from the north! thanks, Megan!!! Hans is done with Darth Vader TIE Fighter and will get to the Imperial Star Destroyer after he finally finishes the Death Star this morning! <3

Detour...

Hans is HOME!  Finally, at long last.  We were d/c'd yesterday.  Unfortunately, we were stopped from heading north on I-5 due to a Brush Fire.  But, as we have learned through the years, when something sounds like a hassle, it sometimes winds up FUN.  We bailed on the freeway in time to try to cut around to Bakersfield through our favorite little artsy/hippie community of Ojai, CA in the Ojai Valley.  Our drive to LA takes us over a mountain pass and the only way around is to go far and wide... By the time we got to Ojai we gave up on making it home and Kev managed to book us two rooms at the Hummingbird Inn.  It was super cute!  Our caravan, of me, Elle and Hans and then Gramma Kathy and Aunt Debi arrived safely.  Kevin arrived early on the scene this morning to fetch Hans and deliver donuts.  Us girls shopped today.  It's pretty cute in Ojai.  I'm a fan if you can't tell!

We missed our homecoming party sponsored by our sweet neighbors, but we enjoyed our Welcome Home Hans banner and Lasagne feast tonight, instead.  Thanks Mars!

The amazing/incredible news????  Hans' pain has been at a ZERO since about yesterday morning!!!  Is it our new oral pain regime?  Is it the treatment taking effect??  Only time will tell.

We get a day off of travel tomorrow and then we start our commute to LA.  The drive takes 4 hrs round trip, barring any bad traffic, delays, or detours.  The treatment should take three hours each day, barring any delays.  So, our day will be like a job.  A bad job, perhaps, but an important one.  Dr. Wong says he'll schedule a CT of the spine on about June 18th to check up on our progress.

Thanks for checking up on us.

22 Days!

I just got the scoop on radiation.  Dr. Wong, our Radiation Oncologist, decided Hans' spine could tolerate 12 days of therapy (not wanting to over-do it from earlier treatments to the original 'tumor bed') and that his skull could tolerate a full 20 days.

Today is Day 3 for spine and Day 1 for skull.  Looks like we'll be doing our xrt/carbo/etoposide routine until July the 3rd!!!  Holy cow.  Hopefully it'll be just the right amount!

The pain team is switching us to oral, longer lasting Oxycontin, in the hopes of coming home FRIDAY!

We've been spoiled.  Elle has been spoiled!  She's been on a Laguna Beach getaway with Sally!  Thanks a bunch!  Aunt Debbie and then Grandma Kathy got in last night and at this moment, they went to fetch Elle and have a girls day out.  They came bearing gifts and I was glad to see Hans building last night and this morning.  Last night he actually seemed to be doing  a little bit better than he has in a while, even though his pain is at a pretty constant 4 - 6  (on a 0 to 10 scale) despite the amount of pain meds he is getting...

That's what I know now.  Perhaps my next post will be from Bakersfield.


 

Radiation=Xrt

Thank the Lord, we have begun to treat these new tumors today! I will from here on refer to radiation as Xrt. It is a commonly used abbreviation, I like it, it is easier to type, so I'll use it:)
Today was a loooong day! Thankfully, Kevin was smart enough to VETO the scheduled audiogram for today! We'll do that later.
This is what Hans had to do today:
Get fitted into a body mold for xrt.
Get a new CT of the spine in that body mold.
Get xrt simulation for xrt to spine.
Receive first dose of IV Carboplatin along with prehydration and premeds.
Receive first dose of oral Etoposide.
Receive first xrt treatment to spine.

Gotta give it up to Kev for knowing that an audiogram at 1:30, or at any point in the day today was not a good idea:) This all took 5 hours down stairs. Hans was pretty wiped out after being up and about all of that time. Tomorrow we will pretty much repeat what we did to the spine today to the skull. Dr. Wong is waiting for Hans' chart from TX to determine just how much treatment Hans will get. We are anticipating doing this therapy from 12 to 18 or 20 days in total! Then, Hans will get stem cells, then we will scan then we will look for another therapy. Just to be clear, the antibody therapy has been stopped for the time being.  It isn't necessarily ruled out for some point in the future, however.

Oh, how I hope and pray that Hans will respond to this stuff like he always always has. Dr. Araz says she feels like we are in about the same boat we were in last summer. Last summer was a scary boat, but he pulled out of it okay. No one knows what is going to happen, no one has a crystal ball. All we know is that we are all in this fight for Hans. His doctor is in it, his NP is in it. Kev and Elle and I are in it. It is the primary organizing factor of our lives. We are fighting for our boy. All of you are too. We know that last year we were in a pretty scary/terrifying situation. He pulled out of that nose dive! We are praying to hit replay on that miracle!

Thanks to: Our sweet girl, Elle for being here with us almost every single night here.  Every day is just so much more fun and wonderful with our girl around! Thanks to: Roxie for driving (6 hrs) down from Santa Cruz to be with us! Thanks to Holly and Michael for driving in from your trip to Palm Spring to visit Hansie. Thanks to Sally for the cookies and for taking Elle for a very special Laguna Beach outing! Thanks to G'ma Kathy and Aunt Debi for coming in tomorrow. Thanks PL for the Lego, and thanks to the Tennesons for the special delivery! Thanks to the Toths and the Mars for animal care (Kevin has been here about half of the nights so our pets have needed care!) Thanks to the Hendersons for your generous gift! Thanks, people. My goodness. 

new spots/new plan

i am giving everyone a very quick note tonight. i am wiped out mentally and emotionally...but here's the quickie version: New spots have popped up around the spine on a couple of spots, there is a new soft tissue spot on the skull, there are two boney lesions...pelvis and head...and the two spots we already knew about...the lymph node and the kidney/spinal area. Overwhelming news, but not 'devastating' . The doctor said she did not see anything 'life-threatening'. Today our doctor said that Hans must have two different Neuroblastoma mutations. That has blown me away over the course of the day. Hans has not one Neuroblastoma to fight...but two. His boney disease tends to respond to one type of therapy, his soft tissue disease another. We will begin to treat him on Monday. We will start up radiation therapy concurrently with chemotherapy. They will radiate his spine and skull. We will use Carboplatin. It is a 'radiosensitizer' chemo. I am sort of wordless for any kind of thoughtful commentary on all of this. Just keep on praying...looks like we have a taller order than we had bargained for for Hans' 18th miracle... I just wanna thank you for hanging in there with us. Thanks for your thoughts and prayers and all of the little and grand kindnesses. It is holding us up!